Prolonging Death
- Thread starter luggy
- Start date
Thanks to everyone for all of your replies. They are very much appreciated.
By way of an update, I spoke with mum's GP at her bedside today. After a frank discussion, a joint 'best interests' decision was made, between the GP and myself, to withdraw mum's Oral Nutritional Supplements, given the poor quality of her life. Nature is finally being allowed to take it's course. The care home manager is fully supportive of the decision.
The priority now is to keep mum comfortable for however long 'it' takes.
By way of an update, I spoke with mum's GP at her bedside today. After a frank discussion, a joint 'best interests' decision was made, between the GP and myself, to withdraw mum's Oral Nutritional Supplements, given the poor quality of her life. Nature is finally being allowed to take it's course. The care home manager is fully supportive of the decision.
The priority now is to keep mum comfortable for however long 'it' takes.
I'm pleased to hear that you've got this outcome.
I'm sorry you've had to fight for it, this shouldn't be how it works.
I'm sorry you've had to fight for it, this shouldn't be how it works.
I can't help thinking that it's time that all GPs, consultants, care home managers and everyone else involved were fully informed about Advance Directives, what they mean and how they are applied when it comes to dementia. I often hear that people are advised to sort out LPA following diagnosis. ('Because soon you won't be capable of looking after your own finances...') Some are also advised to give up driving. (Because soon you won't be able to drive safely...')
But it seems the professionals stop short of saying you should make an Advance Directive too. (Because soon you will lose your mind, become incontinent, lose mobility. You won't know where you are, won't be able to do anything for yourself and won't recognise anyone anymore. In other words, you will have no quality of life.)
OK, I understand - no one wants to tell anyone that. But it is so important! It's also an incredibly sensitive, emotive subject and every individual has a personal opinion. People with MND and other awful terminal illnesses/conditions know exactly what's coming and make those decisions but for some reason, with dementia, it seems we're still so reluctant to tell the truth about what's going to happen. Why?
My mother knew exactly what she wanted when it came to EOL decisions. She made an Advance Directive (It was called a Living Will back then) some 20 years before dementia set in and also made sure family knew her wishes. She knew very little about dementia (certainly not that she would get it one day!) but was very clear about quality of life and what she would or wouldn't tolerate. And she made myself and my brother aware of her wishes. Her 'line in the sand' was incontinence/personal care and she once said to me, 'If I can't even wipe my own bum I don't want to live. And if I lose my mind, what is the point in continuing? Just give me a handful of happy pills and let me die.'
Of course, nothing is that simple but at least we knew her wishes. Her living will included her statement saying that if she ever lost capacity or would be dependent on others to look after her for the rest of her life, she didn't wish to receive any further medical treatment or interventions, even if that meant she would die as a result.' (That last bit has to be in the directive.) As it happened, I wasn't required to challenge any decisions before she died. It was unexpected really - she was 'out of sorts' for a few days then she just... died. But in the previous few years there were times when I had to think seriously about what to do in her best interests. She was pushed over by another resident in the care home and broke her hip. Should I have presented her Living Will then and insisted she didn't go to hopsital to get it fixed? I don't know. I didn't and she recovered and was 'OK' for a couple of years longer though she had little quality of life. I decided that if she got an infection I would refuse antibiotics on her behalf and let nature take its course. But it's not that simple! She didn't get the 'old man's friend' chest infection or pneumonia but got UTIs and her behaviour would be off the scale. I worried the CH would ask to leave which I really didn't want so I allowed antibiotics. But was I going against her wishes? Probably.
There is also the problem you come up against when you deal with other people who don't realise you are trying to stick to your mother's expressed wishes and think you just want to bump her off. I can remember waving mum's Living Will on one occasion, saying I didn't want her to go to hospital again. (Mum had had a minor fall.) The care home worker gave me a hateful look and said, 'Why? Don't you love your mother?'
So it's never easy. Going to Switzerland for euthanasia is never going to be possible because you need to have mental capacity to decide to end your life. That's why it's so important to make these decisions while you still have capacity, get them down in writing and make sure also your family know your wishes.
Just because we can keep someone alive doesn't mean it's the right thing, especially when it's absolutely not what the person wanted. Continuing life 'at any cost' is not what most people would choose. I'd even go so far as to say it is inhumane to keep someone alive (through forced feeding, for example) when doing so achieves no purpose. No one would do that with a pet, no matter how much you loved it, because at that stage you are keeping the animal alive for your own benefit not because it's in the interest of the poor creature. So why do we insist on keeping a person alive when there is no hope?
But it seems the professionals stop short of saying you should make an Advance Directive too. (Because soon you will lose your mind, become incontinent, lose mobility. You won't know where you are, won't be able to do anything for yourself and won't recognise anyone anymore. In other words, you will have no quality of life.)
OK, I understand - no one wants to tell anyone that. But it is so important! It's also an incredibly sensitive, emotive subject and every individual has a personal opinion. People with MND and other awful terminal illnesses/conditions know exactly what's coming and make those decisions but for some reason, with dementia, it seems we're still so reluctant to tell the truth about what's going to happen. Why?
My mother knew exactly what she wanted when it came to EOL decisions. She made an Advance Directive (It was called a Living Will back then) some 20 years before dementia set in and also made sure family knew her wishes. She knew very little about dementia (certainly not that she would get it one day!) but was very clear about quality of life and what she would or wouldn't tolerate. And she made myself and my brother aware of her wishes. Her 'line in the sand' was incontinence/personal care and she once said to me, 'If I can't even wipe my own bum I don't want to live. And if I lose my mind, what is the point in continuing? Just give me a handful of happy pills and let me die.'
Of course, nothing is that simple but at least we knew her wishes. Her living will included her statement saying that if she ever lost capacity or would be dependent on others to look after her for the rest of her life, she didn't wish to receive any further medical treatment or interventions, even if that meant she would die as a result.' (That last bit has to be in the directive.) As it happened, I wasn't required to challenge any decisions before she died. It was unexpected really - she was 'out of sorts' for a few days then she just... died. But in the previous few years there were times when I had to think seriously about what to do in her best interests. She was pushed over by another resident in the care home and broke her hip. Should I have presented her Living Will then and insisted she didn't go to hopsital to get it fixed? I don't know. I didn't and she recovered and was 'OK' for a couple of years longer though she had little quality of life. I decided that if she got an infection I would refuse antibiotics on her behalf and let nature take its course. But it's not that simple! She didn't get the 'old man's friend' chest infection or pneumonia but got UTIs and her behaviour would be off the scale. I worried the CH would ask to leave which I really didn't want so I allowed antibiotics. But was I going against her wishes? Probably.
There is also the problem you come up against when you deal with other people who don't realise you are trying to stick to your mother's expressed wishes and think you just want to bump her off. I can remember waving mum's Living Will on one occasion, saying I didn't want her to go to hospital again. (Mum had had a minor fall.) The care home worker gave me a hateful look and said, 'Why? Don't you love your mother?'
So it's never easy. Going to Switzerland for euthanasia is never going to be possible because you need to have mental capacity to decide to end your life. That's why it's so important to make these decisions while you still have capacity, get them down in writing and make sure also your family know your wishes.
Just because we can keep someone alive doesn't mean it's the right thing, especially when it's absolutely not what the person wanted. Continuing life 'at any cost' is not what most people would choose. I'd even go so far as to say it is inhumane to keep someone alive (through forced feeding, for example) when doing so achieves no purpose. No one would do that with a pet, no matter how much you loved it, because at that stage you are keeping the animal alive for your own benefit not because it's in the interest of the poor creature. So why do we insist on keeping a person alive when there is no hope?
It certainly does make you think @sdmhred I'm glad of this place where we can all share our experiences.
Thank you for writing this @Jaded'n'faded
It's a heavy burden that we carry for our loved ones, and there will always be someone who has an opinion to the contrary.
My mum hasn't got an Advanced Directive, and it's something that none of my family had ever heard of before all this, but it's something that we should all consider, even if they aren't always the definitive answer to this issue.
The turning point for our situation was talking to mum's GP. I had previously made my views known to the care home and Mental Health Nurses, but they always seemed to be keen to continue with trying out different strategies to improve things for mum. I understand that this can be beneficial in certain circumstances, but mum is too far gone for any of that now.
I would advise anyone to submit a 'Subject Access Request' to obtain GP records. This is easily done if you have LPOA for Health & Welfare. These can be a revelation. In our case, I could see all of the interactions between the care home and the GP and it was clear that mum's condition was being underplayed. I had sufficient evidence to fill in the gaps which helped the GP to see my point of view.
On giving my reasons to the GP, he agreed straight away and made the decision to withdraw ONS with immediate effect, stating that it was a joint 'best interests' decision between him and myself.
It is a relief, but I'm aware that the journey is not over yet and could continue for some time.
@Jaded'n'faded . Thank you for this post. I agree with everything you say.
I often think that I’m on the same wavelength as you are.
Having lost both my husbands, the first from bowel cancer and more recently “A” from dementia I find it difficult to understand how people in our position skirt around these issues and don’t want to accept the inevitable.
I am, at the moment looking into making an advanced directive for myself and have found the part about having to actually include the words “ even if I die as a result “ very helpful. Thank you.
I think you’ve made some very good points and I certainly resent the fact that the medical profession seems to prioritise quantity of life over quality. There are many treatments which are life changing and mean someone making significant adjustments. I wouldn’t want this and would choose no treatment rather than face a much compromised lifestyle for the sake of being alive.
Although I had a difficult relationship with my Mum I know she would hate the person she’s become and wouldn’t want her life prolonged. Due to lockdown I wasn’t able to discuss an advanced directive. I’m thankful my Dad has agreed to a DNR but this only applies in the case of cardiac or respiratory arrest.
I think someone with Alzheimer’s would be able to get to Switzerland if they had enough insight in the early stages of the illness and the persons GP didn’t drag their heels in signing off the paperwork. My Mum was aware of what was happening for at least 18 months pre diagnosis but wasn’t aware of Dignatas. I’ve have risked helping her if she’d wanted to go.
Glad there is a satisfactory outcome. I don't think there is much more that you can do other than ensure that there is a palliative care plan in place.
I agree with much of what you say, butI think there is another side to living wills / advanced directives that also needs to be considered and it is a little unwise to generalise about them, so I am going to play at being Devil’s Advocate @Jaded'n'faded
Here is a real scenario for you cited in Beauchamp and Childress (2009, 6th Ed). While advance directives have a use, they don’t account for problems in a person’s ability to anticipate a future state. Margo is a lady with Alzheimer’s Disease and has a living will executed at the onset of her Alzheimer’s stating she does not want life sustaining treatment if she developed another life-threatening illness who according to her carers ‘is one of the happiest people they have known’. She then develops a pneumonia. Would you honour her advance directive and respect her precedent autonomy by not treating her or act in what appears to be her best interests and overall happiness and treat her?
They did that with my mum. Kept pumping her with supplements. Told me it was to try & maintain her skin integrity as they didn't want her being in agony with bed sores. What they didn't tell me is that bed sores have to be reported & is a red flag against the home. It's cruel and totally I humane. You'd be prosecuted if you kept a dog in that condition. So why is keeping a human being like it acceptable? ((((((((Huge hugs)))))))) xx
